RareConnect Support & Capacity Buildinghttp://blog.rareconnect.org
Rare Connect moderators blogThu, 01 Feb 2018 14:19:25 +0000en-UShourly1http://blog.rareconnect.org/wp-content/uploads/2016/04/cropped-Logo_fav-32x32.jpgRareConnect Support & Capacity Buildinghttp://blog.rareconnect.org
3232rareconnect/eqiHhttps://feedburner.google.com21 ways to participate in International Rare Disease Day 2018http://feedproxy.google.com/~r/rareconnect/eqiH/~3/H2eJsEY_tmo/
http://blog.rareconnect.org/uncategorized/21-ways-to-participate-in-international-rare-disease-day-2018/#commentsTue, 30 Jan 2018 09:41:24 +0000http://moderators.rareconnect.org/?p=769Patients as proactive actors in research
Rare Disease Day 2018 (28 February) focuses on this year’s theme – research. This year’s video pays tribute to the role patients play in research. The patient community needs researchers. They discover diseases and develop treatments and cures. But researchers also need patients and reply upon their participation to ensure research is meaningful. Patients are not only subjects but also proactive actors in research.

There has been great progress in rare disease research, in part thanks to the advocacy work of the rare disease patient community. However, the fact remains that there are over 6000 rare diseases, an estimated 30 million people living with a rare disease in Europe and 300 million worldwide, but no cures and few treatments available for the majority of these diseases. To help change this, patient involvement in research needs to be taken to the next level.

Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policymakers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.

6. Organize an awareness-raising desk in your hospital, city, office, or public area. Offer information, brochures, and coffee to people who are curious. Feel free to distribute the EURORDIS factsheets. Utilize volunteers from your association and friends to help you operate the desk and provide information to people on the day.

7. Hang up the Rare Disease Day poster in your home, office, or school
https://www.rarediseaseday.org/downloads

Have an activity to add to the list? Share it in the comments.

Bonus activity: Join the Thunderclap

Looking to raise awareness about your rare disease and connect with others around the world? Start a Discussion about your disease on RareConnect and we will promote your post on social media.

]]>http://blog.rareconnect.org/uncategorized/21-ways-to-participate-in-international-rare-disease-day-2018/feed/7http://blog.rareconnect.org/uncategorized/21-ways-to-participate-in-international-rare-disease-day-2018/Basic notions to get the most out of Googlehttp://feedproxy.google.com/~r/rareconnect/eqiH/~3/e-WWBBSevRc/
http://blog.rareconnect.org/best-practices/basic-notions-to-get-the-most-out-of-google/#respondFri, 26 Jan 2018 12:19:05 +0000http://blog.rareconnect.org/?p=1430We know, you were told not to google your disease but let’s be honest you did it and if you’re lucky you got tons of results and maybe it was difficult to filter those. We believe searching online for your disease, especially after the diagnosis, should be done but with caution. For example, always make sure the information is updated, check the creation date or the date when the paper was published. Always go to the About/Contact/Who we are section. Some pages are very well disguised and you might think there’s a patient organisation behind it but in fact, it’s a pharmaceutical company. We know they probably did it with their best interest but it’s better to be transparent about this.

Going back to Google. Every day, the internet helps patients and families all over the world to learn more about their disease, to find support, to see they are not alone. The benefits are exceptional.

Some patients and caregivers have become real experts on Google search, sadly because they have sent long hours searching for information and support for their disease online.

From our side, we’ve been answering patients’ emails since RareConnect started in 2009. We try to do our best when answering these emails, always pointing out that we’re not medical experts and that we don’t offer any kind of medical advice. We’ve become quite good in finding information with the limited time that we have. Here are some of our basic tips in order to use google search efficiently.

We suggest to start big and then focus on more specific searches.

Start with the disease name and after that type…

Country: Familial Mediterranean Fever United States (or the country you live in)

Cities: Ehlers Danlos Barcelona

Language: Alkaptonuria Español

Organisation: Evans Syndrome organisation

Association: Fibromuscular Dysplasia association

Support group: Pulmonary Hypertension support group

Foundation: Creutzfeldt Jakob Disease Foundation *This term is more common in the US than Europe.

If possible, try to do this search in different languages. Sometimes the only existing patient organisation is not from an English-speaking country. Orphanet gives you the name of the disease in 7 languages. Just switch the language of the page (top menu bar).

Try to search different names for the same disease. Some diseases have synonyms. Search for your disease on Orphanet and you’ll see a box with the synonyms and other information. See example below.

Keep it short
Exclude irrelevant words and avoid sentences.

Avoid searching for sentences like

What’s the treatment for XXX disease?— Better use: XXX treatment

What causes XXX?
— Better use: XXX cause

What’s the prognosis of XXXX?
— Better use: XXX prognosis

Is XXXX hereditary?
— Better use: XXXX hereditary

What is the life expectancy of someone with XXX?
–Better use: XXXX life expectancy

Use some of the Google Search Operators
You can use symbols or words in your search to make your search results more precise.
They’re used in a search engine query to narrow the focus of the search.
https://support.google.com/websearch/answer/2466433?hl=en

See below our favourite operators

1- Use quotes to search for an exact phrase
This allows you to narrow the results. When using quotes, you’re telling google that you want to see an exact match, the exact words in that exact order without any change. See a couple of examples below:

Use Google’s Advanced Search Page
If the search operators are too complicated, you can still perform sophisticated searches via the Advanced Search page.

You can access the Advanced Search page by clicking the Advanced Search link on Google’s homepage. This page contains a number of options you can use to fine-tune your searches. All you have to do is make the appropriate selections on the page, and Google does all the fine-tuning for you.

The three filters we use the most are:

Language: if we want to see results written in a specific language
— When I’m looking for websites only in FrenchRegion: if we want to find pages published in a particular region
— When I only want to see results from ItalyFile type: Limits the search to specific file types of files. We mostly use it for pdf
—When I’m looking for documents, guidelines, articles about my diseaseLast update–When I want to see results only from pages updated during the last year

Watch the tutorial: How to search effectively with Google

Search images using Google images
Ever come across a photo that looks strangely familiar? Or if you want to know where it came from? First, you save the image and then search it on Google Images (with the camera button), you’ll be able to see the same image or similar ones on the web.http://images.google.com/

BONUS

Ctrl + F shortcut
Very useful for long pages when there’s a lot of text and you just want to know if your disease is mentioned. Click Ctrl and F at the same time and a small box will appear on the top right of the page. Type the term you’re looking for and you’ll see how many times it’s visible on that page exclusively (not the entire website though). Also works for word documents and pdf.

Google Scholar is a freely accessible web search engine that allows users to search for digital or physical copies of articles, whether online or in libraries. It indexes full-text journal articles, technical reports, preprints, theses, books, and other documents, including selected Web pages that are deemed to be ‘scholarly.’

In another blog post, we’ll explain how to set up email alerts for your disease using Google Scholar.

Watch this Google Scholar tutorial

What do you do to search on Google more efficiently? Share your tips with us!

]]>http://blog.rareconnect.org/best-practices/basic-notions-to-get-the-most-out-of-google/feed/0http://blog.rareconnect.org/best-practices/basic-notions-to-get-the-most-out-of-google/Use Gmail Canned responses to speed up replieshttp://feedproxy.google.com/~r/rareconnect/eqiH/~3/1XgTWrNBYeU/
http://blog.rareconnect.org/best-practices/use-gmail-canned-responses-to-speed-up-replies/#respondMon, 13 Nov 2017 16:12:06 +0000http://blog.rareconnect.org/?p=1414A few days ago we discovered a Google Feature called “Canned Responses”. We found it perfectly handy when you need to send similar email responses out to a number of people. This easy-to-set-up tool allows you to save an email as a canned response and use it over and over again without needing to copy and paste. You can create as many canned responses as you need. This feature is not an automatic reply like the typical ‘out of office message’. It’s a way to have different saved responses directly in your Gmail account. At the end of this post, you’ll find some tutorials.

***

We know from our own experience at RareConnect.org, that the number of emails patient associations can send on a weekly basis can be considerable. Mostly, these are emails from patients living with a rare disease or their families, requesting more information about their illness, asking for the name of a specialist or stating that they suspect they have an illness and need guidance in order to obtain a diagnosis…

Although it is satisfying to be able to help these people that are going through really difficult times, who we deeply empathize with, sometimes patient associations are overwhelmed with requests. There are many things to do day to day in an association, and sometimes they do not have the necessary staff that also have their jobs and their families.

Please do not misinterpret us, we stand by more personalised communication when it is necessary, and we believe it is much more effective in these cases. However, to answer frequently asked questions that are easily answerable, using automatic replies can be useful, not only for the sender but also for the recipient. It is much faster than writing the same message over and over again, even if copying and pasting from another source. This way the sender is more productive and the recipient receives a message that has been carefully written.

Important! Review these messages regularly to ensure they are up to date, that the links work and the instructions continue to be valid.

Canned responses are also a double-edged sword if used as an easy solution when they truly do not fully answer the patient’s questions. Before using a canned response, we must ask ourselves, “Is my response going to answer all the questions that the patient/family has posed?” If no, this is when we should edit the body of the email removing some parts and adding others.

It is important to give each reply a personal touch; such as addressing the patient/family by their name, thanking them for getting in contact with you and signing off in the appropriate manner. One way of ensuring we do not forget to insert the correct name is by marking the sections that need to be adjusted for each recipient in bold or different colour so that they stand out and so that we remember to change them.

WikiHow has a great tutorial here on how to set up the Canned Responses in your Gmail. If you prefer you can watch a video tutorial hereandhere.

What’s your experience with the Canned responses? Do you use them?

Does your organisation receive lots of patient requests? How does your organisation deal with all the emails?

Continual and consistent promotion of your RareConnect community is critical to member participation. When promoting this platform highlight the benefits of your community like human translation and the global meeting place.

RareConnect requires all organizations involved in the project to announce the launch of each community and establish a link. As a participating organization you should have permanent link on your websites to RareConnect. We have created a badge, or logo, in each language as a way to include the link. You can see a patient organisation who’s using it here.

To save the badge just right click and then “Save image as”

If you would prefer, use the RareConnect logo.

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http://blog.rareconnect.org/promoting-rareconnect/rareconnect-badges/feed/0http://blog.rareconnect.org/promoting-rareconnect/rareconnect-badges/How to advocate for Rare Diseases on social mediahttp://feedproxy.google.com/~r/rareconnect/eqiH/~3/huzkQzYyQSg/
http://blog.rareconnect.org/social-media-case-studies/how-to-advocate-for-rare-diseases-on-social-media/#respondTue, 24 Oct 2017 08:38:17 +0000http://blog.rareconnect.org/?p=1399“We’re thrilled to introduce you to our first-ever collaboration on the blog!Anna Suarez is an advocate for patients, caregivers, and anyone impacted by mesothelioma, which is a rare cancerthat is diagnosed in less than 3,000 people each year. Anna’s work focuses on raising awareness, educating others about preventative measures, and supporting the rare disease community as a whole. She firmly believes that our voice is stronger when we work together, and is looking forward to Rare Disease Day 2018!”

Raising awareness about rare diseases can be a means to show emotional support and compassion for patients and families, encourage donations to research, and educate the broader public. Due to the fact that rare diseases by definition affect a smaller portion of the population, many people are unfamiliar with or may never have heard of these conditions. Social media offers a larger platform to get the word out about specific diseases or overall community. Additionally it can provide a larger support community and a way for patients and caregivers to connect despite large distances.

This leaves the question, how can patients or organizations in the rare disease community best utilize social media?

For advocacy organizations especially preparation is key to maximizing the impact on social media. Keeping track of any relevant holidays or campaigns is a major part of this, and listing these events in the form of a calendar is an easy way to stay organized. There are many variations of awareness calendars that can be found online, like this one shared by the United Nations. Creating an editorial or social media calendar with upcoming awareness holidays ensures that you won’t miss a chance to connect with the larger community and support your cause. For those advocating on behalf of a rare disease, these opportunities cannot afford to be missed. Many rare diseases, even with that aid of a major holiday, might not receive the attention that is due.

One of the biggest holidays for the rare disease community is Rare Disease Day, which takes place on the last day of February each year and brings together the entirety of the rare disease community to amplify their reach and bring attention to all rare diseases. Individually, cancers like mesothelioma, neurological conditions like central diabetes insipidus, or genetic disorders like Huntington’s disease might only be vaguely familiar, and some, unfortunately, have a grim prognosis. Celebrating Rare Disease Day allows for advocates for all of these diseases to collaboratively raise awareness and make a larger impact.

Finding the relevant organizations and influencers is also a great way to keep track of any upcoming awareness days or campaigns (which you can then include on your calendar!). Advocates may not necessarily be aware of every upcoming holiday, even if they find an online calendar. The calendar from the UN mentioned above doesn’t actually include Rare Disease Day. Following other organizations or influential people can help fill in any gaps and ensure that advocates are aware of future campaigns. Additionally, creating a mental map of other influencers in the community can help illuminate opportunities to collaborate and form partnerships between groups that advocates may not realize were possible.

Other than keeping track of the larger landscape or big picture, it’s also important to prepare for as many of the smaller details as possible. Taking an inventory of any content that you may want to share, such as photos, blog posts, infographics, etc., will make it easier to plan content as you discover upcoming campaigns. Compiling a list of relevant hashtags will also make drafting posts for Twitter, Instagram, and Facebook. Doing this work up-front can help save time in the long run and prevent any last-minute confusion or potential missteps and allow for any post to reach the largest possible audience.

With organization and the preparatory work completed in advance, you can then move on to determining which events in which you can participate. It’s important to note that the extent of your social media presence really depends on internal resources for an organization or the time commitment an individual is willing to make. Some may find that the conversational style of twitter is better suited to the content that they’re interested in sharing. If that’s the case, Tweet Chats may be an important way to engage with others in the community, either as a host or a participant. Hosting an online event may seem daunting, but luckily there is some great advice available, like this post from Hootsuite.

Fully utilizing social media allows advocates and groups that support rare diseases to increase both their individual and collective impact. These tips should help to make the most of any social platform, and can hopefully lead to a greater awareness about rare diseases.

]]>http://blog.rareconnect.org/social-media-case-studies/how-to-advocate-for-rare-diseases-on-social-media/feed/0http://blog.rareconnect.org/social-media-case-studies/how-to-advocate-for-rare-diseases-on-social-media/Get the latest RareConnect updateshttp://feedproxy.google.com/~r/rareconnect/eqiH/~3/E7rsvQcn-fA/
http://blog.rareconnect.org/promoting-rareconnect/get-the-latest-rareconnect-updates/#commentsSun, 15 Oct 2017 09:01:14 +0000http://blog.rareconnect.org/?p=1391Once a month we send updates with the latest RareConnect news in English and Spanish. Do you want to start receiving them? Fill in the form below!

We’d love to know why you are interested in receiving news from us and what’s your connection with rare diseases. Maybe in the future, we could establish some sort of collaboration between us!

These monthly updates include:
– newest RareConnect communities
– communities in the pipeline
– presentation of new features
– recent calls posted in the General Discussion community
– other news about EURORDIS & RareConnect

When we were working on the new RareConnect re-design; we knew we wanted to have a big place where people could discuss general topics that are not specific to a particular community. We came up with the idea to build a community for all RareConnect members and we called it General Discussion Community (GD community for friends).

This community comes from the necessity we observed throughout all these years. Every week we receive tens of emails from people asking if we know other people with the same disease and ideally in the same country. When we suggested the possibility of creating an online community with us some of them told us that they weren’t looking for this level of commitment in that moment. They only wanted to “plant a flag” somewhere and wait because they thought that in the near future maybe someone in the same situation would search their disease on RareConnect see their post and reach out. This “plant a flag” concept stuck in our minds for a long time and we also hated seeing them turn away because we couldn’t offer anything.

In the current rare disease panorama where you have online communities, facebook groups, whatsapp groups, forums, mailing lists… It’s totally normal that not everybody will want to build another space and scatter the patients even more. Not everybody wants to be responsible for a community with all that this means (moderation, promotion, answer questions, start conversations…).

However, when patient’s needs are very specific or the disease/mutation is ultra-rare and finding support online is almost impossible, when the questions are transversal and not disease specific, the General Discussion community might be the best option.

What sort of post can you find there?
– People with ultra-rare diseases looking for others
– People trying to educate themselves about rare diseases
– Questions that are country specific (example: How do I get disability benefits in my country?)
– Awareness and crowdfunding campaigns
– Lots of posts about chromosome disorders

RareConnect has millions of visits per year and it’s the only 8 languages platform focused solely on rare diseases. This makes the General Discussion Community the perfect loudspeaker, doesn’t it? So consider planting your flag on the General Discussion Community. We like to see it as another of your multiple efforts to find other people with the same disease.

Once or twice a month we gather the latest posts on the community and make a Facebook post in different languages. It has a huge reach and our audience helps with the dissemination too. This increases the chance to find someone!

Why don’t you give it a try? Search for your disease, see if others like you are already part of RareConnect and if not, then plant your flag!

]]>http://blog.rareconnect.org/promoting-rareconnect/redes-sociales-para-pacientes-e-investigadores/feed/0http://blog.rareconnect.org/promoting-rareconnect/redes-sociales-para-pacientes-e-investigadores/How do I set up a patient organisation for my rare disease?http://feedproxy.google.com/~r/rareconnect/eqiH/~3/MpHOjJ5Du-c/
http://blog.rareconnect.org/tip-of-the-week/how-do-i-set-up-a-patient-organisation-for-my-rare-disease/#respondThu, 24 Aug 2017 12:27:42 +0000http://blog.rareconnect.org/?p=1357Many people that visit RareConnect are interested in starting a formal rare disease patient organization to advocate for their disease and meet other people. We fully support that idea and wanted to offer a place for discussion about that topic.

The first question is really, “Do I need to set up a new, registered, patient organization within the laws of my country?” If a patient group already exists for that disease, please try to contact them and work together on projects that you think could be beneficial to people living with the rare disease. To search a list of patient groups in Europe, check EURORDIS’ website or write us and we will do a search: info@rareconnect.org

The next question is, “How can I find others to work with me on starting a patient group?” You can find other motivated partners through online communities like RareConnect. Try and establish a working group of interested people and discuss the first steps on a group Skype call. Don’t try to do it all alone. Ask family and friends to take on roles in the association or help with activities crucial to the non profit patient association being started. Check the Findacure website for more resources on starting a group. Contact a rare disease National Alliance in your country and ask for help.

What are the next steps to get a rare disease patient group started?If you have recently started a patient group, where and how did you do it?

Kshitiz Singh is a Post-Doctoral Fellow in the Department of Precision Medicine at Georgia Institute of Technology, Atlanta, US. His research focuses on applications of Genome Engineering and Nanotechnology for achieving gene therapy. Dr. Singh worked as a Doctoral Researcher in the Department of Gene Therapy and Regenerative Medicine at Vrije Universiteit Brussel, Belgium under the direction of Thierry VandenDriessche and Marinee Chuah, where his work focused on achieving efficiency of CRISPR/Cas modification for treatment of Hemophilia & Myotonic Dystrophy I.

Kshitiz is also the moderator of the gene therapy discussion group on RareConnect.org. Join the conversation here.